Living with ulcerative colitis

Five years ago, I had never heard of ulcerative colitis. About a week and a half before I got married, I became quite sick and didn’t know what was wrong. Some tests were run on me and the results didn’t turn up anything. I did everything I could to look happy at my wedding, but at times it was difficult knowing how much my insides hurt. After our wedding, we were planning on taking a drive down the California coast and stop in at Disneyland. I wasn’t feeling well, so that plan was still being evaluated. However, on Tuesday, September 11, 2001, the decision was made for us and we came straight home.

Upon getting back, my doctor had me consult with a gastroenterologist to schedule a colonoscopy. A colooscopy is one of the most uncomfortable tests that could ever be performed, not the test itself, but the day before the test when you have to get cleaned out with stomach lube (glycol, glycerol, or some other yuckful stuff). It wasn’t until after the procedure that I was told I could have added flavor like lemonade packets to it. The results of the test immediately indicated that I had ulcerative colitis, like the gastroenterologist suspected. I was put on steroids and medication that I’d have to take the rest of my life (not the steroids, luckily). For the most part, I live a normal life, but a few times, I’ve had flare ups causing me to go back on steroids to clear it up. The last one was about 1.5 years ago when I got a cold, couldn’t work for a few weeks which caused me a lot of stress (I’m self-employed, so when I don’t work, I don’t get paid) which turned into a flare up. Since then, I’ve been OK. However, on a number of days, my stomach is in knots and there is not much I can do about it. Up until this past January, I basically did nothing or very little on the days when I couldn’t stand it.

This past January, I decided to run the Rock ‘N’ Roll Marathon which put me on a training schedule running 4 days a week; I knew that if I didn’t run, I wasn’t going to be ready for the marathon. Part of the reason I wanted to run the marathon was to prove to myself that ulcerative colitis wasn’t going to rule my life. During the marathon, at about mile 20, my stomach acting up, so it was mind over stomach to finish the marathon, which I did without incident. This morning, when I went to run, my stomach was a little queasy, but I had to run. I was OK until about mile 10 when I had to walk a bit as my stomach was acting up. I made it through the run, like always, without a problem.

Some days it is harder than others, but I take it one day at a time and do my best to cope. Reducing stress is one of my main goals as I can see a direct correlation between flare ups (not sure about normal queasiness) and stress. Next Sunday, my family is joining me at the Chron’s & Colitis Foundation’s Guts & Glory Run to raise money and support research towards a cure of this disease. While my disease is mild compared to others, it sometimes makes it difficult to get through the day; I do the best that I can.

28 thoughts on “Living with ulcerative colitis

  1. tracie

    Have you been able to find anymore information between ulcerative colitis and running? I was diagnosed last year. Running sets mine off too, so I took a year off running. I went on a light and slow trail run/walk last week for a whopping 25 minutes, and the next day, the symptoms returned. I ran for 30 years without any problems, why now? (That's a rhetorical question...)

    Reply
  2. Scott Gruby Post author

    Hi Tracie,

    I haven't thought much about putting the two together. I no longer run marathons, but try to run 4-5 miles occasionally (it seems like maybe once a week). My colitis seems in check when I run, but some mornings if I'm not going great, I don't run. I think for me, stress is the major cause of issues. It's much easier said than done to eliminate stress.

    Reply
  3. Mike

    I run Marathons and have UC...I don't take any meds and manage it through diet and supplementation. It is very possible to run with UC and be very successful.

    Reply
    1. Chris

      Can you explain exactly the foods you do and don't eat with UC and what you mean exactly by suppliments? Thank you.

      Reply
      1. Scott Gruby Post author

        Hi Chris,

        I take a multi vitamin everyday as well as Tums for the calcium as I don't eat dairy. While likely not directly related to my UC, I'm a bit lactose intolerant and avoid dairy products (I still eat chocolate and some things that have smaller amounts of dairy). I tend not to eat curries and real liquidy foods as my stomach just can't handle it. I just kind of see what I can tolerate. In the last 9 months, I've switched to a mostly vegetarian diet and that hasn't really changed my UC, but has made me feel better.

        Everyone reacts differently to UC, so I can't really say what works and what won't work for others.

        Reply
  4. Alice

    I have had UC for about 7 years, and have been running for 20+. I have run many marathons since being diagnosed with UC. Mine is primarily controlled by diet, though I do sometimes add in meds if I am getting into a flare and can't get it under control within a few weeks.

    Some days it is a challenge. If I'm in a flare, I often have to find a bathroom to use during my run, which isn't always convenient. However, I've found that staying active, watching my diet, and generally doing whatever I can to reduce my stress levels really helps me keep things under control.

    Good luck - I hope you are able to return to running soon!

    Reply
  5. Sara

    I have UC and run regularly. Sometimes my runs are more difficult than others--so when I can sense that my stomach is going to give me trouble, I'll do my runs near my house so I can swing by for a bathroom break. My disease is more under control now, so it helps knowing what to expect. Back when it was undiagnosed and out of control, running was a nightmare. I have persevered though, and will do my first marathon this year. I am curious as to what dietary changes you've made to help keep symptoms in check. Mine also seems to be stress related, and I've been on meds for about 9 months now.

    Reply
    1. Scott Gruby Post author

      Good luck on your first marathon! I enjoyed the 2 that I ran, but it took a lot out of me. I still love running, but marathons are out.

      My UC flareups are definitely stress related. I've done my best to keep stress under control, but it's sometimes difficult. I've been on medication for the last 8.5 years and things are under control. The only major thing I cut out of my diet is dairy as I'm also a bit lactose intolerant. Other than that, I eat whatever I want.

      Reply
  6. Ruthe

    Hi,
    Just finished my first marathon and my time was pretty bad because of all my bathroom stops and cramps!
    I'm wondering if you ran into any good info on staying hydrated and nourished while running? I have a very hard time with GU...cytomax is only tolerable for a short time and as you well know, you have to stay hydrated and keep your e-lytes in balance! I've had a hard time finding a web site that addresses these specific problems. Any info you can give me?
    Thanks!

    Ruthe

    Reply
  7. Erynn

    I have UC and recently started training for my first half marathon. I feel so tired and run down that I am having a hard time staying motivated to train. I have until November, and I want to prove to myself that I can do it. Any suggestions/tips to help me get past these feelings?

    Reply
    1. Scott Gruby Post author

      For me, running a marathon was more mental than anything else. I followed a training schedule that I found online and slowly built up. You may try a different time of day to train; I find that when it is too hot, I don't do as well and in the late afternoon, I also don't do as well.

      If you haven't run before, then your feeling run down may not have anything to do with UC and more to do with exercise. If there is a running club near you, you might try joining to see if that helps your motivation. I didn't do this, but I also have the drive to finish what I start; others aren't as lucky.

      Good luck and once you can get over the tired part of running, it gets a lot easier in my opinion.

      Reply
  8. Becky

    My husband is a marathon runner and recently got diagnosed with UC. We are working hard at sticking to the SCD diet since that seems to be hightly recommended. His symptoms have defintiely improved. But we were wondering how to carb-load before a race. Any suggestions or what worked for you?

    Reply
    1. Scott Gruby Post author

      Hi Becky,

      Every person handles UC differently. I can't recall what I did before my 2 marathons; I didn't follow a specific diet, so I didn't have a carb limitation. Today, I don't run marathons and don't follow a specific diet, except just eating what feels right.

      Reply
  9. Misty Donald

    I was just diagnosed Friday. I have been training for the New York marathon since July. I started having problems during my taper. New York has been a goal of mine for two years. But the doctor said it's so bad right now it could kill me if I ran this marathon. I'm having a hard time dealing with this. As long as I can run someday and have a normal life is now my goal. I've been in alot of pain for a week. Dr said it could take 2-3 weeks for it to clear up, even with meds. Is this normal for a flare up? I was also told stress and diet don't have anything to do with UC. Any advice is appreciated!

    Reply
    1. Scott Gruby Post author

      Hi Misty,

      Your diagnosis couldn't come at a worse time. Flare ups can vary in length and yes, it can take several weeks depending on lots of factors that your doctor can discuss with you. I've found that stress definitely could trigger flare ups for me; diet only affects me a little. If I were you, I'd take the advice of your doctor and shoot for the marathon next year. Hopefully by then, you'll start learning how to live with UC and learn what your body likes and doesn't like.

      Of course, my blog is no substitute for proper medical advice. Discuss anything you plan on doing with your doctor.

      Reply
  10. JUDY

    Scott, I know how you feel I had IBS for years then, I had Salmonella poisioning, at the tail end of the poisioning I was diagnosised with UC.
    Then 9 years later I was diagnosised with Celiac disease. I have been
    able to heal from these conditions, it is possible. I eliminated the inflammation causing foods, and add in healing foods. If any one is interested in the report I wrote on how I healed visit healibd.biz I wish you all
    good health.

    Reply
  11. Alison

    Hi Scott,

    Your story is very inspiring, and I am glad to hear you are still active as much as possible.

    I am training for my 2nd half marathon- I ran my first in October prior to knowing I had UC and got hooked to the experience right away. I was officially diagnosed earlier this year and recently put on mesalamine, I noticed right away I felt more sluggish during my training, especially during long runs I have difficulty- out of breath, nausea, etc. I wanted to know if you had a similar experience and if so if you have any training tips? My race is less than a month away and just after a week of treatment I am worried I will have a very difficult time come race day. Appreciative of any of your insight.

    Reply
    1. Scott Gruby Post author

      Hi Alison,

      I ran my first marathon 5 years after I was diagnosed with UC and so I was on (and still am on) Asacol for a long time. I don't know what it is like to train without being on the medication.

      On my longer runs, I did have a little shortness of breath and nausea, but I attributed them to the temperature and distance of the runs.

      You may want to talk to your doctor and see what he or she has to say on what could help.

      Good luck!

      Reply
  12. Lesley Lee

    Hi I have UC and have done for 26 years. I'm 35. I first started running 12 years ago and my UC has affected my running very little. I find that morning runs are easier on my stomach and on an evening my daytime eating seems to cause me a bit more pain. I'm going to do my first marathon is 2 weeks but have done lots of races, 10ks and halfs. I usually use some loperamide on race day (just one for security) and mebeverine. Not ideal but gets me through.

    Reply
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  14. Tanya H.

    It is great to see so many people engaging in this discussion. I was diagnosed with Ulcerative Colitis in 2007 and I have a flare up about ones a year. I am constantly on medicine and spend months every year on predisone :/ BUT, it does not hold me back. I have run 3 marathons since 2011 and I run 6 out of the 7 days a week. I was not a runner before, but I have discovered that running actually has helped my UC. I actually ran my second marathon while on predisone and experiencing the end of a flare up! But, overall, the running helps eliminate stress and this has been the primary reason in my opinion that determine when I have flare ups. Every year during finals weeks at the University I have experienced a flare up and right before my first trip to live in Argentina for a year, I also had a flare up. Running has been the best thing that has ever happened to me. I wish I could somehow use my passion for running for UC. I would not know exactly how to approach this since I have just recently started engaging with UC discussions. I will not hide my UC like I had in the past, but I hope to be a living example that UC cannot stop me or anyone else from living their life how they choose.

    Reply
    1. Myra

      Tanya, thank you for your post. I was diagnosed with UC in 2008. I have made many changes to my diet which I think have helped me cope with my UC symptoms. Just recently had a flare up that has me back on steroids to reduce the inflammation which almost went unnoticed by me. I don't think this one was related to my training but more a factor of work related stress. I am training for my first marathon later this year with my husband. I am hopeful that I do not have to give up my running. I truly enjoy the sport and your story inspires me to continue my training.

      Reply
  15. James

    Hi,

    I am 21 and am from the UK and was diagnosed about 2 years ago! Stress definitely seems to be a major factor however I have discovered that a high protein diet, along with a supplement containing Bovine colostrum has majorly improved my condition!

    Has anyone else tried this and if so how did they find it?

    I have also been trying to put on weight but can't seem to find a balance between enough food and a settled stomach if anyone has any tips they would be greatly received!!

    Yours

    James Sharratt

    Reply
  16. Allison

    I would love to know what others do when your out for a run and don't have anywhere to "go". I would love to get back outside to run but am worried about having an accident

    Reply
    1. Scott Gruby Post author

      My current running route is a 4 mile loop (takes me about 38 minutes) where I run by public restrooms about 14 minutes from home. So, I'm not too far from a facility. The weekend before last I did a 3 day, 50 mile walk for MS, and the only way I got through it (I was having a flare up) was the porta-potties that were setup every 1.5-3 miles. Sometimes it is hard, but I've managed to do pretty well.

      Good luck!

      Reply
  17. Juliet

    Hi all,

    I was diagnosed with IBD almost 11years ago. The diagnosis alternated between crohns and colitis for few years, until the specialists settled on severe ulcerative colitis. I have been on all sorts of medications, steroids of course, nasty immunosuppressants and now have been on asacol for the last few years. I remember talking with one of the many specialists I've had over the years, asking him about dietary restrictions. He told me that diet will not affect the disease. How can that be? How can the things we put into our bodies not have an effect!

    Over the years I have done much personal research and tried many different eating regimes. The best I ever felt was when attempting a yeast buster diet. Some research has linked an over growth of candida to bowel problems. You follow a no sugar, no yeast diet. Along with taking supplements and a daily tonic which help kill the candida, heal and clear the bowels. I had NEVER felt better in my life! My weight stabilized (after years of being on and off steroids), my skin was clear, I had lots of energy and clarity in my mind, all of my symptoms vanished! As soon as I came off the diet....Wham! Flare-up and hospital stay!

    I think exercise and diet are important no matter what. As UC sufferers we should all be doing some weight/ resistance training as well as plenty of stretching and meditation.

    Reply
  18. Zdravko Zdravkov

    Hi All,

    I have a UC, i did not know how long about. But i run a lot, a run trail series, one ultramarathone and other like this! I will die but i will not stop to running! Affter all, I feel much better after mu running sesions! I stil not run a Marathon, but i will!

    Reply

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